Meaning in life of terminally ill parents with minor children compared to palliative care patients - a quantitative analysis using SMiLE.

IF 2.7 Q2 HEALTH CARE SCIENCES & SERVICES Palliative Care and Social Practice Pub Date : 2024-07-31 eCollection Date: 2024-01-01 DOI:10.1177/26323524241264883
Henning Cuhls, Michaela Hesse, Gregory Heuser, Lukas Radbruch, Gülay Ateş
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Abstract

Background: Caring for terminally ill patients with minor children can be very stressful. The perceived quality of life is significantly influenced by the Meaning in Life (MiL). No studies were found that focus on the prioritized special needs of this patient group.

Objectives: The aim is to compare and contrast terminally ill parents with minor children and palliative care patients in Germany, in order to provide appropriate support beyond medical, nursing or therapeutic interventions.

Methods: Terminally ill parents diagnosed were surveyed using a validated instrument 'Schedule for Meaning in Life Evaluation (SMiLE)'. The study listed various areas that contribute to the MiL, followed by an evaluation of their importance and satisfaction levels. The researchers then compared these findings with data collected from palliative care patients.

Results: In Germany, 54 patients, mostly female and with a mean age of 43, were included in this study between February 2017 and September 2020. The median age of the 96 children during the survey phase was 7 years. The comparison group consists of 100 palliative care patients in Germany; mostly aged 50 years and older. For terminally ill patients most important areas were in decreasing order family (100%), social relations (80%), leisure time (61%), nature/animals (39%) and home/garden (30%). Although the overall indices are close between both groups, there are significant and highly correlated differences between them. Parents felt limited by their illness in being a mother or father, as they wanted to be.

Conclusion: The involvement with SMiLE led patients to consider their coping resources. The areas relevant to terminally ill parents differed from those relevant to palliative care patients. All participants identified family as the most important factor for MiL. The results suggest that evaluating MiL can serve as a coping strategy and help terminally ill parents with minor children.

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有未成年子女的临终父母与姑息治疗患者的生命意义比较--利用 SMiLE 进行定量分析。
背景介绍照顾有未成年子女的临终病人可能会带来很大的压力。生命意义(MiL)对感知到的生活质量有很大影响。目前还没有研究关注这一患者群体优先考虑的特殊需求:目的:比较和对比德国身患绝症的父母和未成年子女以及姑息治疗患者,以便在医疗、护理或治疗干预之外提供适当的支持:方法:使用经过验证的工具 "生命意义评估表(SMiLE)"对确诊的临终父母进行调查。研究列出了有助于生命意义的各个领域,然后对其重要性和满意度进行了评估。然后,研究人员将这些结果与从姑息治疗病人那里收集到的数据进行了比较:2017 年 2 月至 2020 年 9 月期间,德国有 54 名患者参与了这项研究,其中大部分为女性,平均年龄为 43 岁。在调查阶段,96 名儿童的年龄中位数为 7 岁。对比组由 100 名德国姑息治疗患者组成,他们的年龄大多在 50 岁及以上。对于临终病人来说,最重要的领域依次为家庭(100%)、社会关系(80%)、闲暇时间(61%)、自然/动物(39%)和家庭/花园(30%)。虽然两组的总体指数接近,但它们之间存在着显著的高度相关的差异。家长们认为,疾病限制了他们做自己想做的父亲或母亲:参与SMiLE促使患者考虑他们的应对资源。与身患绝症的父母相关的领域与姑息治疗患者相关的领域有所不同。所有参与者都认为家庭是影响临终关怀的最重要因素。研究结果表明,评估MiL可以作为一种应对策略,帮助有未成年子女的临终父母。
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来源期刊
Palliative Care and Social Practice
Palliative Care and Social Practice Nursing-Advanced and Specialized Nursing
CiteScore
2.90
自引率
0.00%
发文量
37
审稿时长
9 weeks
期刊最新文献
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